Jo Ashlinehttp://joashline.com
A Sweet Dose of TruthMon, 11 May 2015 19:54:55 +0000enhourly1http://wordpress.org/?v=3.1.3blogspot/PBqthttps://feedburner.google.comBreaking News! People With Autism Are Among You!http://joashline.com/2015/05/breaking-news-people-with-autism-are-among-you.html
http://joashline.com/2015/05/breaking-news-people-with-autism-are-among-you.html#commentsMon, 11 May 2015 19:42:27 +0000Johttp://joashline.com/?p=2533I have a little secret to share with you. Come here. A little closer. Okay, you ready? There are people with autism among you. In fact, you may be standing next to a person with autism RIGHT NOW. I’ve included a visual aide to assist you in the identification of someone with autism. Pay close attention so [...]]]>

I have a little secret to share with you.
Come here.
A little closer.
Okay, you ready?

There are people with autism among you. In fact, you may be standing next to a person with autism RIGHT NOW.

I’ve included a visual aide to assist you in the identification of someone with autism. Pay close attention so you know what to look for:

First, notice the eyebrows. See how they’re made of hair? Yeah. That. Also, there seems to be two eyes and a nose. That’s a major characteristic of people with autism. Finally, people with autism may smile. Or wear a baseball hat. Sometimes, they may do both things at once; that’s usually a dead giveaway that you’re in the presence of someone with this disorder.

Now, whatever you do, don’t make a sound. Don’t move a muscle. You don’t want to let on that you suspect a thing because everyone knows that people with autism are……………. ALSO PEOPLE.

I know. Shocking, isn’t it?

What’s even more shocking is that they’re everywhere. They go to the same grocery stores you do. They frequent the same parks and beaches. They attend the same worship services (not that it counts, because Jesus is too busy blessing you and your perfect family to care about some shmuck with autism flapping in the back pew).

Get this: they’re even allowed to go to school with your kids (I know, right?!) Your child may have even played on the same school playground equipment as someone with autism. Probably not at the same time though, because that would be too inclusive, so your offspring should be safe. But just in case, you may want to panic and call your local school district and demand ”those people” be removed from the property immediately. Preferably with a police escort and an ambulance or two standing by.

I mean, United Airlines is doing it and it seems to be working, so why not give it a try? Seems that all you have to do to get rid of someone with autism, is just ask.

As you ponder excitedly who you’ll call first (Your pediatrician’s office? Maybe the local community swimming pool? Your daughter’s girl scout troop or the boy scouts? Oh God, what if someone in the troop is gay AND has autism? *Head explodes*) let me fill you in on something: Autism is not going away. It’s not a fad, it’s not bad parenting, and it’s not a life of glorious never-ending entitlements. It’s a neurological disorder you dummy, and it’s coming to a loved one near YOU. This is not a threat, nor is it a scare tactic. It’s just the truth. Autism is everywhere and as long as you’re everywhere too, you’re going to come across it, and, despite what you may think, probably live to tell about it.

Here’s the thing: autism families like mine, who have been elbow deep in discriminatory bullshit for the better part of the last decade, are pretty much over judgmental pricks like you. This is our society too; our community. These are our churches and synagogues. These are our hospitals and our stores. These are our schools and our parks. We belong here and we’re not going to let some ignorant a-holes tell us otherwise.

And here’s a thought: if we make you uncomfortable, maybe it’s your turn to feel unwelcome and discriminated against. Maybe it’s your turn to stay home, day after day, wondering how you’ll ever be able to take that family trip, or attend a loved ones celebration. Maybe it’s your turn to leave dinner half-way through because the stares from others are penetrating through your skull. Maybe it’s your turn to be denied the simple right to access society without being told you don’t belong. Yes. I think I like that idea. I say let’s run with it.

You know what the worst part of your ignorance and hatred is? Big jerks like you raising another generation of jerks, who will inherit the earth and look at my son with special needs as “less than.” I break out in hives every time I think about it. Perfectly wonderful children who would be better off being raised by a cardboard box are being poisoned by your ugly interpretation of the world. Where’s CPS when you need them? Oh, that’s right. They’re harassing your next door neighbors because their son has autism and you felt the need to report the family for what you deem to be terrible parenting.

I can’t fix you. It’s not that I’ve given up and that I won’t continue to try and minimize the assholery my son and others like him have to face on a daily basis. I will never stop advocating. But I can’t fix stupid, so instead of wasting my time on you, I’m just going to keep bringing my child with autism….everywhere. You know, exactly where he belongs. Those who are salvageable will get onboard and realize the universe is big enough for all us. I know it seems hard to believe, but so is our local Trader Joe’s.

So move over, or get out of the way.

Oh, and one more thing.

May you or someone you love never need a single accommodation or the compassionate understanding of a stranger.

Because there’s nothing worse than having to tell someone who’s already being crushed by the unforgiving weight of isolation and discrimination

“I told you so.”

]]>http://joashline.com/2015/05/breaking-news-people-with-autism-are-among-you.html/feed6She Was Me.http://joashline.com/2015/02/she-was-me.html
http://joashline.com/2015/02/she-was-me.html#commentsSun, 22 Feb 2015 04:38:05 +0000Johttp://joashline.com/?p=2493He was supposed to play in his first Challenger baseball game of the new season this morning, but instead we found ourselves at our local Children’s Hospital emergency room, making sure Andrew’s foot wasn’t broken. (Never a dull moment around here, that’s for sure). It was there that I first spotted them; a father and [...]]]>

He was supposed to play in his first Challenger baseball game of the new season this morning, but instead we found ourselves at our local Children’s Hospital emergency room, making sure Andrew’s foot wasn’t broken.

(Never a dull moment around here, that’s for sure).

It was there that I first spotted them; a father and son pacing the floors of the ER waiting room.
This was no leisurely walk. Dad was trying desperately to keep his son close by, doubling his stride just to stay beside him.

It doesn’t take a genius to spot lifetime members of your own tribe.

As they got closer to where my husband and I were sitting with Andrew, we immediately recognized the stims, the vocalizations, the desperate and non-stop attempts to flee no matter the danger lurking beyond the safety of his father’s arms; these were as familiar to us as our own arms and legs and when our eyes met the exhausted gaze of this frazzled father we exchanged a look that said more than words ever could.

He was beautiful, this child.
(They all are, you know).

He was also in a hurry, and his dad was getting tired.

“Sit. Just sit for a minute. Just for a minute. Sit. Just stay here. Just one minute.”

And I got the sense that a minute was 60 seconds too long for this kid.

Eventually his mama took over, and dad melted into the nearest chair in search of temporary respite.

It was somewhere between their 47th and 131st lap around the circumference of the room that I was able to stop them long enough to cheer mom on.

“You’re doing great, mama. We’d be right there with you if our son’s foot wasn’t hurt.”

She looked over at Andrew, then back at her own son and the familiarity washed over her too.

Oh how she wanted to stay and talk!

Oh how her beautiful boy wouldn’t let her!

Fifteen seconds later they had spilled outside, beyond the automatic double doors and she was yelling for her husband while trying to shield her son from the busy street ahead with her small frame (you’d be surprised how strong we become when the situation calls for it).

That frenzied dance.

How well I know it.

It was like watching a scene from my very own life unfolding right before me, and for a split-second, it took my breath away.

We are many, according to the CDC, but we are so few Monday thru Sunday, out there in the real world, as we try to appear calm and composed and collected while society stares with it’s mouth agape at our manic efforts.

Coming across a mirror image of yourself like that beyond the confines of your home is like coming face to face with a rare, exotic, endangered species.

Before either my husband or I had a chance to assist, the parents had expertly managed to maneuver their son back inside, where the festering hospital germs didn’t seem nearly as scary as the fast and unforgiving cars outside.

A few minutes later, once her heart rate had returned back to normal and her ragged breath steadied, the mom quickly and quietly made her way towards me and handed me a folded piece of notebook paper.

“I don’t have many friends. I mean, I don’t have any friends. At least none that know what it’s like.”

I didn’t ask if I could hug her. I just wrapped my arms around her and tried not to get my snot bubbles on her shirt.

“Well, now you have at least one,” I told her.

And just like that, the world became a little less lonely for both of us.

]]>http://joashline.com/2015/02/she-was-me.html/feed1We Should Have Had More Kids, Right?http://joashline.com/2014/10/we-should-have-had-more-kids.html
http://joashline.com/2014/10/we-should-have-had-more-kids.html#commentsFri, 10 Oct 2014 22:08:28 +0000Johttp://joashline.com/?p=2478The panic washes over me suddenly while I’m in the shower. We should have had more kids, I think to myself. “WE SHOULD HAVE HAD MORE KIDS!!!!!!!!!!!!!!!!!!!!!!!!!!!” I scream to my husband, the words piercing through the hot steam, penetrating my heart, echoing through me until they settle in my soul. There is silence on the other [...]]]>

The panic washes over me suddenly while I’m in the shower.

We should have had more kids, I think to myself.

“WE SHOULD HAVE HAD MORE KIDS!!!!!!!!!!!!!!!!!!!!!!!!!!!” I scream to my husband, the words piercing through the hot steam, penetrating my heart, echoing through me until they settle in my soul.

There is silence on the other side of the door.

He must sense my biological clock is not behind this.

He must sense he should tread carefully.

“Why?” he finally asks.

A simple question spoken with hesitation, knowing the answer is likely complicated.

“We should have had more kids. For Ian.”

My voice rises a few octaves as visions of my little sister and I engaged in sibling banter flash across my mind. “He’ll never have a sibling to truly confide in. To count on.”

The truth slips out before I can contain it. I turn the shower knob to HOT.

“WE SHOULD HAVE PLANNED BETTER!” I yell out. “HE WON’T HAVE ANYONE TO HELP HIM WITH ANDREW.”

“He’ll have us,” he responds gently, and I picture grey hair and portable potties and assigned caregivers bumping in crowded hallways as they scurry on their way to assist someone somewhere demanding something.

“We did the right thing by not having more,” he says, refraining from outright reminding me about the statistics and the finances and the fears that occupied every conversation we ever had on the matter.

He’s right.

But I don’t tell him so.

Dammit, I wish the water weren’t so cold.

***

We are piled into the car, all four of us, Andrew strapped into the largest car seat we’ve ever laid eyes on.

Mikey calls it The Recliner.

I can’t see shit to the right of me because of it, crossing my fingers every time I have to change lanes.

But it keeps Andrew safe, keeps him comfortable, keeps him from trying to get out of the car while we’re hurtling down the road at 60 mph.

The ride is quiet, my mind still embroiled in a mental tug 0f war about our grave mistake in not having more children. I feel guilty. For all of it. The thoughts, the decisions, the regrets, the what ifs.

Suddenly, Andrew lets out a wild giggle from The Recliner. Ian soon joins him and the quiet car becomes filled with their laughter; loud, ridiculous heaps of hysteria.

I think of my sister; the many years we spent in the backseat of our parents’ car, laughing uncontrollably at something we knew they’d never understand. The kind of conspiring that can only exist between siblings.

I look in my rearview mirror
and all I see is Love. Companionship. Brotherhood. I see a life spent lifting each other up in the ways they know how, even if one is much stronger than the other. I see a relationship I have no right to define by the constricting parameters of my own anxieties and expectations. I see a bond that is unbreakable, one that will only grow stronger with time.

I look in my rearview mirror

and what I see are two boys navigating a relationship that makes sense to them.

Two futures intertwined with one another, in a world that may not get it. And that’s okay.

What I see are two brothers,

and in this very moment,

with their heads thrown back in euphoric joy in the backseat of my station wagon Volvo,

I know that that’s

more than

enough.

]]>http://joashline.com/2014/10/we-should-have-had-more-kids.html/feed4The Night Beforehttp://joashline.com/2014/09/the-night-before.html
http://joashline.com/2014/09/the-night-before.html#commentsTue, 09 Sep 2014 02:46:27 +0000Johttp://joashline.com/?p=2456It’s the night before Andrew’s first day of school. For many years this night held a mixture of excitement and anxiety for me, and after his new outfit and shoes were laid out, and his lunch box was packed, and his backpack was filled with shiny new school supplies, I would lay wide away in bed, endless questions [...]]]>

It’s the night before Andrew’s first day of school.

For many years this night held a mixture of excitement and anxiety for me, and after his new outfit and shoes were laid out, and his lunch box was packed, and his backpack was filled with shiny new school supplies, I would lay wide away in bed, endless questions pummeling my already exhausted mind:

“Will he be scared?”

“Will he miss me and feel like I abandoned him?”

“Will they understand his attempts at communication?”

“Will they change his pull-ups or make him sit in a soiled diaper for hours?”

“Will he learn something?”

“Will he have fun?”

“Will he be safe?”

My desire to have my son kept safe while at school was certainly not unique; I’ve yet to meet a parent who wistfully dreams of their child being mistreated at the hands of school personnel.

But there’s something uniquely terrifying about sending a child who cannot talk, who cannot fend for himself, who would not think twice about running into oncoming traffic or jumping into a body of water, who has seizures and requires constant, vigilant, compassionate attention, into an environment I cannot control and into the arms of people I don’t really know.

(If this is the part where you think he shouldn’t be in school in the first place, I urge you to go $%^@ yourself immediately).

Still, the first day of school brought with it hope for progress; a tentative assurance that this would be the year friendships would be made, goals would be met, and functional language would develop. The heart of a parent raising a special needs child is never short on desires for opportunity and growth and tiny bursts of miracles that hold the promise of a better tomorrow for their son or daughter. School seemed like the perfect place to unravel our lengthy wish list and let the professionals work their magic.

The first mornings would come, the obligatory photos would be taken, and soon the new school year would be underway. Frustrating IEP’s and staff changes, Andrew’s fluctuating health, and the reality of our country’s special education system would eventually grind potential progress to a halt, and in no time our wish list was put away and we were back to just surviving.

But each year we met the end of summer with the same sense of “This year will be the year GREAT things will happen!” and I would stay up late the night before school, coating crisp apples in homemade caramel sauce and handwriting notecards to new and returning staff, my heart holding on to that tentative assurance that I was right: good things were in store for our Andrew that year.

Until the year they weren’t.

Until the year we found out our worst nightmare had come true.

Until the year we were told about the countless acts of alleged abuse he had been forced to endure during his time at school.

Until the year we finally figured out why he had stopped toileting, why he tore his face apart, why he screamed when he saw the bus pull up to our driveway, why he refused to get onto his favorite mode of transportation, why he lost acquired language, and why our enthusiastic, happy, affectionate son was emotionally and physically unraveling.

It’s been nearly a year and half since we pulled him out of that class, out of that school, out of the hands of the people we trusted to care for and nurture our son. He spent nine months at home with me while I attempted to repair the damage that was done, and though we’ve made tremendous progress, PTSD is alive and well in our house to this very day.

When he finally went back to school late last year - far, far away from the school we left behind - the night before his first day felt suffocating and lonely, and instead of lying in bed trying to sleep through the relentless thoughts, I curled up on the couch and sobbed until the sun came up.

Trust, once it’s shattered, lies at your feet, keeping you from moving forward, forcing you into a life of stagnation, each tiny, splintered piece a reminder of what you once had, what was brutally taken from you. Repairing it seems insurmountable, walking around it feels impossible, and so you’re left to stare at the remnants of a world you will never look at the same way again.

It’s been a rough ride, to say the very least, but I’m holding on. For my family’s sake (and mine).

So here we are, once again, the night before his first day of school.

I feel apprehensive and anxious, and a bit exhausted. But the terror that’s consumed me for so many months has taken a back seat to a flicker of that old excitement and a smidge of hope, though both are a bit battered and bruised.

Healing has invited herself in, and in the most surprising and unexpected ways.

I do not forgive.

And I will never forget.

But I’m looking at something I didn’t think I’d be able to see from where I’ve been standing since last March: A future for Andrew that’s not shrouded in pain and fear. A future for me that’s not consumed by mistrust and resentment. A future for our family that’s not focused on and driven by the horrendous past.

I’m not entirely there yet. I’m just beginning to see the outlines and fuzzy shapes of this future. But it’s there. I just know it.

So while the journey continues towards something better than I’ve imagined in a very long time, I’m committed to taking baby steps to help us all get there.

Which is why tonight, the night before school starts for Andrew again, I find myself in the kitchen, stirring brownie batter and cutting out custom gift tags, the house filling up with the smell of a few simple ingredients fusing together to create something spectacular.

I find myself looking forward to seeing the familiar and kind faces of the van crew that picks Andrew up each day. I find myself daring to hope there is more good than evil, and that my son will be placed in kind, competent hands.

I find myself hoping Andrew’s new shoes won’t give him any blisters.

I find myself living in a new reality, where salvaged parts of my old life quietly take their place among the complicated characteristics of my new one.

I find myself feeling almost normal,

for the first time,

in a long time.

]]>http://joashline.com/2014/09/the-night-before.html/feed1Special Needs Parenting: Don’t Ever Look at My Son That Way Again.http://joashline.com/2014/08/special-needs-parenting-dont-ever-look-at-my-son-that-way-again.html
http://joashline.com/2014/08/special-needs-parenting-dont-ever-look-at-my-son-that-way-again.html#commentsMon, 25 Aug 2014 19:06:01 +0000Johttp://joashline.com/?p=2437Disclaimer: I don’t care where you stand on the vaccine/autism issue. I have friends on both sides of this heated debate and I have friends who are right down the middle. And if I dislike you, it likely has nothing to do with your opinion on this subject and everything to do with you being [...]]]>

Disclaimer: I don’t care where you stand on the vaccine/autism issue.

I have friends on both sides of this heated debate and I have friends who are right down the middle.
And if I dislike you, it likely has nothing to do with your opinion on this subject and everything to do with you being a self-righteous jerk.

I believe as autism families, we all have our own truths as to how our child’s diagnosis manifested; what we saw, what we heard, what we experienced. I’m never going to discredit your experience because that’s not my place. Plus, I’m too busy living my very busy, very overwhelming, very intense, and very unique autism life with my own child to devote any time to trying to prove or disprove what YOU feel is YOUR truth.

What I will NOT stand for is someone approaching my son, dramatically nodding their head in pity and exclaiming feverishly, for all the world to hear, “Those #$&*ing vaccines.”

Don’t.

Don’t diminish my son’s existence like that. Don’t look at him like there’s nothing there. Like he doesn’t matter. Like he’s a statistic and nothing else. Don’t look at him like he’s a victim and then look at me like being his mom makes me a victim too. He is a living, breathing, joyful, amazing presence in my life. He matters. He is NOT to be pitied. He is to be respected. He is to be given opportunities to flourish and grow and coexist peacefully and happily in a world that’s just as much his as anyone else’s. He is to be provided with the means to become as independent as possible, as safe as possible, as educated as possible.

Pity doesn’t do any of those things. Pity replaces opportunity and respect with ignorance and inaction. Pity prevents progress. Pity gives you an excuse to stay uneducated about the real challenges and discrimination special needs people face each and every day. Pity makes you part of the problem.

My son doesn’t need your pity.

He needs you to stop staring at him like he’s from outer space. He needs you to pull your head out of your ass long enough to become informed and active. He needs you to keep your opinions to yourself unless those opinions involve all the ways special needs individuals continue to be marginalized by our society and all the ways you intend to help eradicate that.

I don’t know why Andrew has autism. I don’t. But he does. And he’s here. And even if I knew for sure, it wouldn’t change how I feel about him or how I feel the world should treat him or what I believe will help him succeed in life. He’s alive and fabulous and stubborn and funny and determined and I swear to God, if you ever come up to him like that again, and look at him like that again, and shake your head at him like that again,
the only victim in our vicinity

will be you.

***I know there is a lot of information out there right now regarding a potential whistleblower from the CDC and the autism-vaccine debate. That’s not what this blog post is about, so please don’t turn it into that. This post is about the way our children are reduced to nearly nothing by people who look at them as merely shells of real human beings. If you are my friend, and you believe your child was injured by a vaccine, I will hug you and listen to you and believe you. If you are my friend and you believe vaccines had nothing to do with your child’s diagnosis but you wish you had something tangible to cling to, I will hug you and listen to you and believe you. Regardless of where we each stand on this topic, I know we can all agree that there is much work to be done in the way our children are perceived and treated by society, and that’s a subject I’m happy to get into any time of day, with anyone.***

]]>http://joashline.com/2014/08/special-needs-parenting-dont-ever-look-at-my-son-that-way-again.html/feed1A Letter to an Impolite Cowboyhttp://joashline.com/2014/07/a-letter-to-an-impolite-cowboy.html
http://joashline.com/2014/07/a-letter-to-an-impolite-cowboy.html#commentsThu, 10 Jul 2014 22:03:41 +0000Johttp://joashline.com/?p=2427Dear Impolite Cowboy: I saw you on the track this morning, wearing your giant hat, walking your tiny dog, sweating through your wrinkled flannel, and I thought nothing of you; just another passerby, enjoying the same space, the same sun, as humans often do. I jogged towards you, my favorite song pulsating in my ears, my [...]]]>

Dear Impolite Cowboy:

I saw you on the track this morning, wearing your giant hat, walking your tiny dog, sweating through your wrinkled flannel, and I thought nothing of you; just another passerby, enjoying the same space, the same sun, as humans often do.

I jogged towards you, my favorite song pulsating in my ears, my shins sore, my skin hot, my gait slower than some, but I didn’t care because this is where I’m learning to leave it, to pound it out on the pavement, to free myself from fear and give away the guilt and embrace the pain because it’s the good kind and not the kind that threatens to unravel me from the inside out. This is where I’m learning to let go and I don’t care if I go slow.

I felt your eyes before I saw them, and when I finally met your gaze, you were looking at me, past me, through me, reducing me to the rolls beneath my breasts, the extra skin along my arms, the awkward tilt of my hips and before I could pass you, I saw you shake your head and announce loud and clear:

“That’s gonna take a lifetime.”

I made sure I was far enough away that you couldn’t see me anymore before I let my shoulders heave, before I let your words shove their way inside, sink in and saturate me, before I reduced myself to nothing more than the ugliness of a perfect stranger.

“That’s gonna take a lifetime.”

I knew what you meant and even my cells felt fat and unworthy; this big body of mine, the one I’ve used and abused, whether with booze or Nutella, would take a lifetime to “fix” and make acceptable in your piercing, judgmental eyes.

And then I thought of all the things worth the effort of a lifetime:

Loving my husband

Raising my children

Staying sober

Advocating for individuals with special needs

Forgiveness

Acceptance

Finding peace with mortality

Faith

and

ME.

You’re right. It IS going to take me a lifetime. A lifetime of hits and misses, a lifetime of outsmarting the excuses that seem to linger alongside my good intentions, a lifetime of convincing myself otherwise whenever I want to give up because the voice in my head is no kinder than yours.

But I can’t think of a better way to invest my lifetime than on myself.

It only took a few seconds before I realized you didn’t have the power to make me cower unless I gave it to you, and so I straightned this imperfect body of mine, turned my music up, put my anthem on repeat, and ran, purging your words and crushing them beneath my feet.

I’m gonna remember you for a long time, but not in the way you might think.

I’m gonna remember the day some jackass in an oversized hat tried to tear me down and it only took a moment for me to realize that I didn’t need to give a shit. I don’t know about you, but I think that’s some serious progress right there.

The kind that often takes a lifetime to achieve.

Which makes me think I can’t wait to see what I accomplish next.

Sincerely,

The chick wearing spandex because it’s a free country, who blew past you and made you eat her dust (and can’t wait to do it again tomorrow).

]]>http://joashline.com/2014/07/a-letter-to-an-impolite-cowboy.html/feed5It’s Not Autism’s Fault Other People Suckhttp://joashline.com/2014/04/its-not-autisms-fault-other-people-suck.html
http://joashline.com/2014/04/its-not-autisms-fault-other-people-suck.html#commentsTue, 08 Apr 2014 01:15:41 +0000Johttp://joashline.com/?p=2411“While I do love my son, I wish we hadn’t had him…. Autism is not a life, it is an existence that hurts everyone involved. I had a retirement to look forward to, now I have a child to take care of until I die and then the government will have him. How is that [...]]]>

“While I do love my son, I wish we hadn’t had him…. Autism is not a life, it is an existence that hurts everyone involved. I had a retirement to look forward to, now I have a child to take care of until I die and then the government will have him. How is that good for ANYONE.”

The above comment was left on my blog recently and has made my heart hurt so much.

Autism IS a life. We live it everyday. There are many challenges but LIFE is challenging in general. In fact, my life was pretty bleeping challenging way before my firstborn arrived and was diagnosed with autism. Alcoholism; OCD; Panic Attack Disorder; Agoraphobia; you could say I was pretty damn consumed with these challenges.

It was my children who brought clarity and purpose into my life, no matter what that purpose has looked like.

That above statement: “Autism is not a life, it is an existence that hurts everyone involved.” That’s bullshit. To say that we are merely existing is so far from the truth. We live and laugh and cry and learn and celebrate and crumble and pick ourselves back up again and just when we need it the most, an amazing and unique milestone is met or a new discovery is made (this week it’s my eyelashes, which would be fine if they weren’t attached to my eyes) and we feel more ALIVE than most people I know.

I don’t know this parent from Bob, but I feel incredibly sad for his son. How can you fully love someone if a part of you always wishes they didn’t exist?

I’m also getting pretty sick and tired of people blaming autism for everything. It makes a neat little scapegoat though, so everyone from doctors to teachers to parents to family and friends whip out those fingers and point. Aren’t you guys getting cramps from all that pointing?
It’s not autism’s fault kids get denied the supports they need.

It’s not autism’s fault children like my son are restrained, mistreated, and abused.

It’s not autism’s fault people use the r-word.

It’s not autism’s fault children are forced to spend an entire school day in soiled pull ups until they develop sores.

It’s not autism’s fault students are kept in seclusion rooms, locked for hours at a time, alone and helpless.

It’s not autism’s fault there aren’t nearly enough employment opportunities or transition programs for adults on the spectrum.

It’s not autism’s fault that in the year 2014, segregation is alive and well on public school campuses across the country, with so many of our special needs children kept in back buildings, far away from the general education population because, got forbid, the “normal” kids catch it (By the way, it’s also not autism’s fault that some people believe it’s contagious).

It’s not autism’s fault perfect strangers look at my son and believe he’s not worth the trouble.

Autism may be to blame for many things: Sleepless nights, financial woes, unique challenges which require unique and respectful interventions. I’m not saying it’s a walk in the park and that I bought a cake the day Andrew was diagnosed. But when it comes to so many of the hurdles our families face each day, let’s place the blame squarely where it belongs: On ignorance, prejudice, and a nation that has so much more work to do in order to provide support, services and continued legislation aimed at protecting our loved ones on the spectrum.

And the next time my son is ignored, disrespected, or failed by the system, I’m not going to blame autism.

My finger will be pointed directly at the source

which is most certainly not my autistic child.

Because it’s not autism’s fault, that other people suck.

]]>http://joashline.com/2014/04/its-not-autisms-fault-other-people-suck.html/feed30How Autism Has Made Me Aware of More Than Just Autismhttp://joashline.com/2014/04/how-autism-has-made-me-aware-of-more-than-just-autism.html
http://joashline.com/2014/04/how-autism-has-made-me-aware-of-more-than-just-autism.html#commentsWed, 02 Apr 2014 18:54:45 +0000Johttp://joashline.com/?p=2391It’s Autism Awareness Month again, and since Andrew was diagnosed with autism in March of 2004, this year we mark our 10th Anniversary of being very aware of autism. I could write another post – as I have done in the past -about the various manifestations of autism in our everyday life and the unique [...]]]>

It’s Autism Awareness Month again, and since Andrew was diagnosed with autism in March of 2004, this year we mark our 10th Anniversary of being very aware of autism.

I could write another post – as I have done in the past -about the various manifestations of autism in our everyday life and the unique blessings and challenges we face as parents raising an autistic child, in an effort to bring about more awareness, more acceptance,and less ignorance towards the autism community.

But, I don’t really want to do that.

Instead, I want to talk to you about all the ways that autism has made me aware of so many things about our world I had never considered before we were graced with Andrew in our lives. There are plenty of blogs and websites and speeches and events scheduled for this month that will dedicate their efforts towards the more clinical aspect of autism, but few will likely focus on the fact that autism awareness is a two-way street. It’s not just about being aware of autism. It’s also about how autism has opened the eyes and hearts of millions of people who might otherwise never experience the very best and very worst of what our world has to offer.

Autism has made me aware every single ocean wave is as important, beautiful, and unique as the one that preceded it.

Autism has made me aware you can operate on a level of exhaustion you never thought possible.

Autism has made me aware less is more when it comes to friends. The good ones, the ones who get it and eat sushi in a van with you and your van-obsessed kiddo;, the ones who buy and grate pounds of white cheese for your cheese aficionado; the ones who won’t get offended when you decline the hundredth invitation because the idea of leaving the house feels insurmountable; those are the ones you keep around. Those are the ones you treasure. There is no time or energy to waste on anyone who isn’t willing to be part of the adventure. Tell them to take a hike already.

Autism has made me aware there’s no such thing as an autism expert. To assert that someone is an expert would be to assume that there’s only one true way of experiencing autism, and that’s just not true. This goes for individuals with autism, parents of autistic children, autism professionals, and so on. Instead, there are individuals with varying degrees of experience in the many different aspects of this incredibly diverse spectrum, so it’s wise to seek out more than a single source if you want to know more about autism. I do not, on any given day as I parent Andrew, assume to know what it’s like for my fellow autism moms and dads to parent their children. I do not, on any given day, expect anyone diagnosed with autism to claim to know exactly what it’s like to be Andrew. Conversations which allude to this kind of “expertise,” are conversations I’m just not interested in. I believe there are a multitude of common denominators existing within our community, but there are even more variables in our individual lives that impact how those denominators manifest themselves. So the key word here is respect. Clinging to the belief that my way is the only way would be detrimental to not just my personal growth as a parent, but the overall growth of my autistic child, as well as my ability to advocate for the rights of ALL autistic individuals.

Autism has made me aware the special needs kids I used to ride the bus with when I was in grade school and Jr. High, deserve an apology from me. I’m so sorry that I ignored you all those years, that I never bothered to get to know you, that I laughed at the cruel jokes that centered around your existence in this world. I think about you often. I think about your parents and I wonder where you are and what kind of supports you have in place to make your lives better and more comfortable. I hope you are respected and valued by those around you. I hope you are every bit as unique and wonderful as you were back then, when I was too ignorant to appreciate you for the incredible human beings you are. I pray for your safety, and I pray that you are given every accommodation and opportunity that is rightfully yours. I see you in my child and I hope when I do right by him, that in some small way, I do right by you as well.

Autism has made me aware that the same stretchy, glowing, piece of crap fidget toy can cost 99 cents or 99 dollars, depending where you buy it from. Don’t let fancy prefixes such as “adaptive” or “autism-friendly” fool you. A glow stick is a glow stick, no matter what someone claims it can do for your child. I’ll tell you what it can do. It can glow. The end.

Autism has made me aware behavior IS language. Crying; biting; scratching; headbanging; self-mutilation; these are an expression of thoughts and feelings that need to be addressed. Too often we hyper-focus on the symptoms (“How can I get my child to stop biting himself?”) rather than the cause of those symptoms. “That’s just his autism,” is something I don’t ever care to hear, ever again. Andrew is a thinking, feeling, living boy who relies on behavior to communicate when he has no other means to express himself. There is no attempt to “talk” to us that is too small to overlook. It ALL matters. Please. Pay attention to your children, young and old. If you see a change in behavior, especially a drastic one, please, oh please, do not chalk it up to “autism.” Chalk it up to being human and having something very, very important to say, and then work like hell to figure out a way to understand the language.

Autism has made me aware I can respect and even adore people I disagree with. My Facebook feed is filled with colliding beliefs and opposing viewpoints. As long as they’re presented in a respectful way, I’m okay with it. And truthfully, I, and every single person I know in the autism community that I’m social with -whether in real life or virtually – have one thing in common, and it’s the very most important thing: We love someone with autism, and we want to leave them with a better world to live in. That’s plenty to go on, in my opinion.

Autism has made me aware the R-word is on the tips of the tongues of way too many people. Guys. We’re done, okay? It’s over. Get a new word.

Autism has made me aware the world is even more dangerous than I ever thought possible, and that sometimes, the very worst things can happen in the places you thought were most safe.

Autism has made me aware kids aren’t born prejudiced. That’s something they’re taught. Kids are born curious, and it’s okay for them to ask questions. Shutting them down, telling them to look away; that’s just handing them bricks to build walls that are hard to tear down later. It’s better not to build them in the first place. I’ve always been a fan of the open floor plan myself.

Autism has made me aware everyone deserves a friend.

Autism has made me aware that while siblings often make the best advocates, they also have their own needs, and deserve those needs to be met with as much passion and dedication as is reserved for their special needs brothers and sisters.

Autism has made me aware parents of children without special needs are at the forefront of our children’s futures. You see, they’re raising the kids who will grow up to be adults alongside our children, which means what they’re saying about and doing for our sons and daughters today, matters greatly in what will be said about and done for them tomorrow. I know a mom who is not raising any special needs children. But you know what? She went ahead and started a Challenger baseball league in my neighborhood anyway. And her kids? Her kids need to be cloned because they’re gonna stand alongside my Andrew someday and fight for his rights and treat him with the dignity and respect he deserves. How do I know that? Because they’re doing it already. It may start with a game of baseball, but I see the light come on in the eyes of these peers who take the time on a Saturday morning to buddy up with our special needs children. You can see their wheels spinning, their heartbeats quickening as they realize a little effort goes a long way in the lives of our kids. A seed is planted, walls are torn down, the unknown becomes commonplace, and suddenly, the future looks a whole lot brighter.

Autism has made me aware I would kill for coffee. Not for money or power or prestige. Just straight caffeine. You, me and a cup of coffee? You’re going down and I’m heading to the next therapy appointment with an extra pep in my step.

Autism has made me aware it’s okay to burn bridges if it means forging new and better paths in their place, ones more accessible and leading to many different possibilities, instead of a bunch of dead ends.

Autism has made me aware there’s no shortage of assholes.

Autism has made me aware the day I stop believing I can do something about those assholes, is the day I fail my son. And that’s just not an option.

See? So much awareness going on here. And I didn’t even have a chance to get into how aware I am of bounce house blowers, multicolored smoke bombs, the tractor tipping scene from the Cars movie, the grave importance of never running out of freshly grated, fridge cold mozzarella cheese or sparklers, and that “WOOHOOO!!!!” can have approximately 3,567 different meanings, depending on context.

Most importantly though, is that ten years ago, I was made aware my son had autism.

There hasn’t been a day that’s gone by since, that I haven’t been aware what a precious gift he is to me, our family, and the world.

And that kind of awareness I can get behind.

Ian (left) follows his brother Andrew's lead in exploring the world through his eyes (and hands). Photo by Trevor Niemann Photography

]]>http://joashline.com/2014/04/how-autism-has-made-me-aware-of-more-than-just-autism.html/feed11I’m Not Scared of Autism. I’m Scared that YOU Are.http://joashline.com/2014/03/im-not-scared-of-autism-im-scared-that-you-are.html
http://joashline.com/2014/03/im-not-scared-of-autism-im-scared-that-you-are.html#commentsThu, 27 Mar 2014 18:26:25 +0000Johttp://joashline.com/?p=2380The CDC just announced the latest autism statistics this morning. 1:68 children are diagnosed with autism. To understand the numbers, you have to understand the many variables at play. First, the data was collected in 2010 using a survey of children residing in 11 states. The previous number, 1:88, was based on a 2008 survey. [...]]]>

To understand the numbers, you have to understand the many variables at play. First, the data was collected in 2010 using a survey of children residing in 11 states. The previous number, 1:88, was based on a 2008 survey. The new statistics show a 30% increase in autism over a span of two years, though, depending on who you ask, the reasons for that increase may vary, such as more efficient diagnoses thanks to awareness campaigns and increasingly better trained physicians.

You’re going to see these numbers used in a variety of ways.

They will be bolded, highlighted, underscored and italicized as they SCREAM for you to be MORE AWARE! MORE AFRAID! MORE MAD!

Don’t get me wrong. I’m not saying these numbers don’t matter. They do. They represent lives affected by autism, though I know that even these latest statistics don’t truly reflect what I see around me, each and every day. Autism is everywhere, especially for those of us who know the signs.

But it’s not autism that scares me. What scares me is that autism scares other people. The idea that someone may look at my child and feel fear makes the hair on my neck stand straight up.

Educators who look at my child and see someone who is broken, someone who should be fixed at all costs because he’s not good enough the way he is and his autism must be stopped before it infiltrates society; THAT’s what scares me.

Doctors who resign themselves to giving half-assed recommendations and solutions because they see the word “autism” on my son’s medical chart and use it as a free pass to stop trying to help him in other areas of his life; THAT’s what scares me.

Parents who use the R-word in front of their children to describe anything or anyone that’s worthless, so when they see my child who cannot talk or walk or run or play or interact or learn the same way they can, he is viewed as an unworthy playmate by kids and a drain on society by adults; THAT’s what scares me.

Police officers who interact with autistic individuals and assume they are criminals who are running away or ignoring them and use violence as a means to subdue them; THAT’s what scares me.

School districts who fight parents tooth and nail, determined not to provide proven therapies for students with autism while paying obscene attorneys fees in an attempt to intimidate moms and dads who believe in their child’s right to a free and appropriate education, moms and dads who look at their child and see potential and promise, and just wish the professionals would too; THAT’s what scares me.

A country who clearly continues to see a rise in numbers of individuals diagnosed with autism regardless of why that is, but lacks even the most basic supports for these individuals, especially as they make their way into adulthood; THAT’s what scares me.

Did you know, that with the right supports in place, the right interventions and accommodations, these 1:68 individuals can live a wonderful, productive, happy, life? The kind of life they deserve?

Autism is here. It’s been here for a long time and, in the case of my son, it’s here to stay. It doesn’t scare me and it’s not a bad word in my house. It’s a part of our lives because it’s a part of my son, a son I love without limits, and a son I want to see continue to exceed the expectations of the bozos who told us not to hold out too much hope a decade ago. It’s a part of our lives because it’s a part of our society and society needs to put on its big girl panties and start accepting, accommodating, and planning for the future of these 1:68.

Because the only thing that truly scares me

is if society sees my kid

and looks the other way.

]]>http://joashline.com/2014/03/im-not-scared-of-autism-im-scared-that-you-are.html/feed8Behold: The Evil iPad at Work!http://joashline.com/2014/03/behold-the-evil-ipad-at-work.html
http://joashline.com/2014/03/behold-the-evil-ipad-at-work.html#commentsWed, 12 Mar 2014 01:25:44 +0000Johttp://joashline.com/?p=2370Behold: The Evil iPad Mini Hard at Work, Giving my Son a Voice from Jo Ashline on Vimeo. Need more info on why I posted this video? Read all about it!]]>